Select Committee on Health Written Evidence


Evidence submitted by the NHS Confederation (EPR 57)

  The NHS Confederation is a membership body that represents over 90% of all statutory NHS organisations across the UK. Our role is to provide a voice for the management and leadership of the NHS and represent the interests of NHS organisations. We are an independent organisation.

  The NHS Confederation welcomes the opportunity to give evidence to the Health Select Committee on the Electronic Patient Record and its use. This evidence sets out our views, based on feedback from a cross section of our member forums.

EXECUTIVE SUMMARY

    —  There is a lack of clarity and understanding both with patients and within the NHS over the information which will be held nationally and that held locally.

    —  NHS computer systems already hold and exchange patient demographic data.

    —  The security built into the National Care Record System (NCRS) is tighter than that currently in place for either existing computer held or paper based systems.

    —  If patients are given the option to opt out it will be important for them to understand the potential clinical risks of doing so.

    —  A greater level of public awareness and engagement is required.

    —  Many in the NHS have concerns over the scope and architecture of the overall programme, though in many cases this may be due to a lack of clarity within the service about the detailed plans.

    —  Delays in the delivery of key operational systems which feed NCRS, such as Patient Administration Systems is causing real problems and costs within the service.

    —  Generally, government policies such as the 18 week target and the choice agenda will be severely hit if the new computer systems are not made to work effectively.

FACTUAL INFORMATION

1.   What patient information will be held on the new local and national electronic record systems, including whether patients may prevent their personal data being placed on systems

  The NHS Care Record Service comprises two groups of data/applications/systems:

  Locally held detailed electronic records will typically contain:

    (a)  Name, address, date of birth and NHS number.

    (b)  Details of health conditions such as allergies, asthma or a heart problem.

    (c)  Details of any medicines and diagnostic test results.

    (d)  Notes (including diagnostic images) relating to diagnosis, treatments, therapies, operations.

    (e)  Notes on contact details with the patients such as out-patient visits, GP attendances, including the details of clinicians providing care.

    (f)  Correspondence between clinicians providing care.

    (g)  Planned treatment or visits including reminders.

    (h)  Occasionally additional information that the patient has shared where this is relevant to the patient's health care e.g. about family or work.

    (i)  Applications that support the clinician in delivering care such as electronic ordering, prescribing, scheduling, decision support, alerts and reminders.

  Nationally held summary records that are subset of the detailed local records and will hold information that is potentially required to be shared between caring organisations and teams. Summary records are held by the Spine. The Spine comprises:

    (a)  The Personal Demographics Service (PDS) that stores basic demographic information about each patient together with their NHS Number.

    (b)  The Personal Spine Information Service (PSIS). This is a summary of patient's clinical information, such as allergies and adverse reactions to medicine.

    (c)  The Secondary Uses Service (SUS), uses data from patient records to provide anonymised and pseudonymised business reports and statistics for research, planning and public health delivery

    (d)  The Spine also provides a set of Security Services, to ensure access to information stored on the Spine is appropriately controlled (see below).

  Clinicians have a duty of care under the professional rules of the GMC and other medical practice to record personal and clinical information about their patients. The Care Record Service will become the primary patient record and source of information for the individual or groups of clinicians providing care for patients. It may neither be possible nor advisable therefore for patients to seek to prevent their personal data being placed on these systems.

  Patients need to be reassured that the information held is confidential. There are arrangements within the design of the Care Record Service to limit the sharing of personal data once it has been collected. Patients will be able to request that specific personal data items are place in a "sealed envelope" and not seen without consent. This will allow patients to determine which parts of their records should be accessible to those who provide care. The sealed envelopes are under development but alternative interim arrangements are in place for the early deployments of the spine.

  The Chief Executive of the NHS recently held a summit on the issues surrounding the national programme at which the NHS Confederation and many patient groups were represented. Not surprisingly the issue of patient confidentiality was prominent in the discussions. All parties agreed that further explanation and communication over the current and proposed safeguards are required. It is not clear that patients understand that the information available nationally will be only a small subset of their medical history. Many patients assume that all their information will be available across the country.

  If patients are able to prevent their personal information to be placed on the system, the question becomes how a national system then operates with some participants excluded and to what extent are they prejudicing their own care? The systems in place will be the basis not only of delivering care for patients but also the business processes and payment systems. Will patients be compelled to allow their demographic details to be held but have a veto on the medical history aspects? Demographic information is already stored on NHS systems and transferred between them, albeit on an historic basis. NCRS makes this information available in real time wherever the patient presents for treatment and, for the first time, includes key data which may be invaluable to those providing the treatment.

2.   Who will have access to locally and nationally held information and under what circumstances?

  Once the new service is fully in place, only those who are directly involved in a patient's care will be able to access an individual's information on the Care Record Service. They will need a smartcard, protected by a chip and pin, which are only issued after thorough security checks. Even then not everyone involved in a patient's care will be able to see all of a patient's records. The amount of information they will see will depend on their role. Other care professionals—such as social workers, with a need to know, may also have access to parts of a patient's records.

  Others involved in public health, research, planning and statistics will have access to anonymised and pseudonymised information on the Spine.

3.   Whether patient confidentiality can be adequately protected

  The Care Record Service has a set of security measures, to ensure access to information is appropriately controlled. An automatic record will be kept of anyone who has accessed an individual care record; who they are, what information they accessed and how they processed the data. Patients can ask to see this record.

  These are much stronger measures than are in place for current paper records where no record is kept of who has access or how the data is recorded or used. Also, with access being limited to staff involved in the care of individual patients, the normal best practice rules of confidentiality still apply. It remains an act of gross misconduct for staff to divulge confidential information.

4.   How data held on the new systems can and should be used for purposes other than the delivery of care eg clinical research

  Only anonymised and pseudonymised data can be used for research, public health, statistics and planning. A number of exceptions exist where patient identity can be shared. These need special permission and include:

    —  reporting some infectious diseases;

    —  reporting gunshot wounds to the police;

    —  following a court order;

    —  when a serious crime has been committed;

    —  where there are serious risks to the public or NHS staff; and

    —  to protect children.

5.   Current progress on the development of the NHS Care Records Service and the National Data Spine and why delivery of the new systems is up to two years behind schedule

  It is important to recognise that this is an extremely ambitious project. It is for the Project Sponsor and Responsible Officers to explain any delays. We understand that there has been some diversion to develop systems in support of new NHS priorities—Quality Outcomes Framework in support of the new GMS contract, Choose & Book, PACS, etc plus huge deployment volumes as evidence of real progress.

  The NHS Confederation can give some perspective and feedback from our member NHS Trusts and Primary Care Trusts.

  NHS organisations continue to be fully committed to the overall vision of the NHS Care Records Service (NCRS). However, member feedback indicates

    —  A persistent feeling of disconnect with the National Programme. At a local level members are concentrating on the local deployment of systems as they become available under the National programme. They are not at all clear on either the content or the progress of NCRS. They do not see it is a component that they own or have any particular responsibility for. As a result their commitment to NCRS is somewhat limited. This affects their ability to be advocates for the initiative both within their organisations and with the wider public.

    —  Many IM & T managers in the NHS see that based on their understanding of what is to be held on NCRS the programme as too ambitious in its scope and that the architecture is over-complex. Many are unconvinced that the balance between what is held centrally and what is held locally may not be appropriate. Concern has been voiced that the amount of clinical information really required for a patient who is treated physically away from their usual address is minimal and restricted to allergies and high risk factors. The view is that restricting the national database to only these items would both aid the implementation and reassure patients around the confidentiality issue. The concern is that the range of clinical indicators to be held at national level is likely to grow and that this itself will undermine public confidence in the security of their personal information.

    —  The National Care Record System (NCRS) consists of the spine information held centrally and the detailed clinical record held locally. Much of the information required to be held locally is already held albeit in an incomplete and piecemeal basis with General Practice. NCRS appears not to have the confidence of the public or clinicians. Arguably this is in part because ownership is not resolved. Better to build on the practice data sets. Make it clear that the practice, Commissioning Group and PCT are responsible for the quality of the data and making it available to providers when required. The NCRS spine should only hold the basic demographic details which can point a provider to the correct PCT, PBC and Practice, together with any key risk factors. Indeed should we get national identity cards in the future, this information could be held there. Practice Records will need to be both complete and available. They must be the property of the PCT, held by the practice.

    —  Delivery of NCRS is wholly dependent on the availability of the key feeder systems such as hospital patient administration systems (PAS). The deliverability of these key systems has been, to say the least, disappointing. Many Trusts are having to extend contracts on existing and outdated PAS, deploying patches and fixes to maintain required functionality.

RECOMMENDATIONS FOR ACTION

    —  Initiate a communication exercise with the public and the professional associations through existing patient groups and the media around the elements and safeguards of NCRS.

    —  Provide better staff briefing and communication with key NHS staff around the scope and architecture not only of NCRS but of the National Programme for IT as a whole.

    —  Restrict to a minimum the amount of clinical information held at the national level.

    —  Designate PBC Groups as custodians of individual patient clinical data. Build the locally held NCRS from existing GP systems.

    —  Provide a realistic timescale for the implementation for key feeder systems.

NHS Confederation

March 2007





 
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Prepared 25 April 2007